In 2018, Health Data Research UK – the UK’s national institute for health data science – embarked on a journey to harness the power of UK health data for public benefit. Five years later and the Digital Innovation Hub (DIH) Programme has reshaped the health data research landscape and created lasting impact.
In this post, we hear from two key people behind the programme’s successful delivery. Kay Snowley recalls a pivotal point in the programme and David Seymour shares five of his most memorable moments.
A privilege from the very beginning
By Kay Snowley, Programme Director, Infrastructure and Services, HDR UK
I have had the great privilege of supporting the DIH Programme from the very beginning, starting with a road trip around the four nations of the UK for the initial Design and Dialogue Phase, meeting hundreds of interested people from various sectors, including industry, academia, the NHS and charities and listening to their needs and aspirations for this programme.
It was a refreshing way to start a major venture by taking the time to really understand the landscape and transferring the knowledge gained into an innovative and far-reaching programme.
The programme developed into three key areas, the UK Health Data Research Alliance, the Health Data Research Innovation Gateway and the Health Data Research Hubs. Although I initially supported the inception of the Alliance and the Gateway, my main focus became the Health Data Research Hubs.
The initial seven Hubs were announced in September 2019, and only six months later the world changed due to the global pandemic. At this point I realised how remarkable the Hubs teams were, showing enormous flexibility, unwavering resilience and complete dedication to delivering for the greater good.
The fledgling Hubs pivoted rapidly to become useful to the pandemic effort. They excelled at supporting and delivering vital research and innovative data services that would benefit a huge number of patients and the public as the crisis deepened, and also found innovative ways to use and present data. They really had to simultaneously run and walk!
The Hubs have really made a difference, delivering excellence to their wide variety of users. They are pathfinders for those who come after them, finding solutions to a myriad of complex problems, interfacing directly with patients and the public, understanding their unique assets and making best use of all opportunities offered.
I am humbled by the truly inspiring and amazing people I have met and continue to meet on this incredible journey.
Love at first sight
By David Seymour, Director of Infrastructure and Services, HDR UK
Like Kay, I was also fortunate to join the DIH Programme from the start. It was late 2018 when I first visited the HDR UK office in a consultancy capacity to help develop the strategy through the Design and Dialogue phase. It was ‘love at first sight’ and I had no hesitation in applying for a part-time role as Partnership Director a few months later to support the growth of the Institute and play a key role in establishing and developing the UK Health Data Research Alliance. While it wasn’t until late May 2019 that I joined HDR UK, I had already been a part of two of five standout moments from my DIH Programme journey.
Collaborate to innovate
The first was the inaugural Alliance board meeting in April 2019. We had managed to bring together senior leaders from each of the ten founding Alliance members in person. These were representatives from key national bodies involved in health data across the four nations of the UK, large research data custodians and established research data service providers. While the individuals around the table were clearly representing their organisation, the desire and willingness to come together and collaborate also shone through and this is a theme that ran through the DIH Programme.
I can vividly recall that one of most animated discussions, and a priority of the group, was improving the availability and use of primary care data for research. Roll the clock forward a year and dramatic progress had been made in response to the COVID-19 pandemic. This has been slow to extend beyond COVID-19 in part due to public, patient and professional concerns around access to health care records. The General Practice Data for Planning and Research programme sets out a strategy for developing a new, more secure and efficient way to collect GP data, including a commitment to understand and learn from people’s views and concerns to help build trust not only as the programme itself develops but also more broadly in the use of patient records for research.
Nervous but excited
My second standout memory is gathering at Great Ormond Street Hospital’s Data Research, Innovation and Virtual Environments (DRIVE) unit in May 2019 for the launch of the programme prospectus and call for health data research hubs. This was the culmination of the Design and Dialogue phase and ‘the big reveal’. Nervous anticipation was written across the faces of the HDR UK staff before Sir Mark Walport took the stage. The mood changed to excited enthusiasm as the formal presentations gave way to lively conversations and networking as those in attendance looked ahead to the next phase of the programme.
Inspirational patient stories
The next time a similar group came together was September 2019 when, in the attic of BMA House, the seven successful health data research Hubs were announced to a packed pre-COVID gathering. Everyone was moved by the compelling patient stories that had inspired the Hub collaborations of NHS, academia, industry and patient groups, to bring forward their proposals and plans. The focus on patient benefit and involvement of patients and the public every step of the way has also been a hallmark of the programme.
Around that time, development had started on the Health Data Research Innovation Gateway, and that brings me to my next standout moment – the first UK Health Data Research Alliance symposium. Around 150 people came together to listen, learn, share and problem solve. In addition to an inspiring keynote by Jeni Tennison, who at the time led the Open Data Institute, it was also the official launch of the Gateway.
The Gateway was intended to build on and scale up the NIHR Health Data Finder that had focused on making discoverable a handful of national data assets alongside the curated data assets of the NIHR Health Informatics Collaborative. At the time of the switch across to the Gateway there was metadata for around 17 datasets. Our near-term goal was for an order of magnitude more data assets to be discoverable – within a few months this was exceeded with information on over 400 UK health datasets available on the Gateway. Four nations coverage and greater diversity was achieved through engaging the growing Alliance membership, as well as the Hubs.
We learned that metadata matters, but that the quality was highly variable despite developing a common specification. While discoverability has improved, work to streamline data access request processes based around the Five Safes Framework remains challenging – applying to access data remains a complex process in many cases, requiring significant resource and a good deal of perseverance. The work of the Alliance’s Pan-UK Data Governance steering group is leading the drive to simplify and standardise.
A showcase event
While the bulk of the DIH Programme was dominated by COVID-19 and the creative challenges of working virtually, by June 2022 we could finally bring everyone back together at our celebration event in Birmingham. Everyone in the room and all those joining online were inspired and motivated by our keynote speakers, in particular Rory Cellan-Jones (the former BBC News technology correspondent). It was also striking how much progress had been made across all the elements of the programme and the wider Innovate UK Data to Early Diagnosis and Precision Medicine Challenge (funders of the DIH Programme).
Since June 2022 it has also been rewarding to see how the impact of all parts of the DIH Programme are providing both the foundations and the lessons to support subsequent investments in health data science, in particular HDR UK’s second five years and NHS England’s Data for Research and Development Programme.
I am proud and privileged to have been on the journey with so many committed people.
A foundation for the future
The DIH Programme represents a defined period of funding but was delivered to support the advancement of a much wider agenda – to harness the power of UK health data for public benefit. The programme’s instrumental effort has reshaped the health data research landscape and created lasting impact.
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